Nothin like ah lil parang to get you in the spirit
Category: Random Thoughts
Traveling
I talked about traveling with my scooter the last post buh we talking traveling again…
So they let me drive the scooter all the way to the plane door. They treat it like they would a stroller so I get a little claim tag to hang off it. I drive it down the ramp, park it there and then they bring it whenever we get to the destination right back in the same place so I just walk off the plane and ride away. It’s great…and remember that time a while back when they changed the gates on me and the rude ass delta gate agent asked me if I cyah walk? With the scooter, I can just ride away and leave her ass in my dust 🙂
But of course, there are cons…I actually do feel a little more pressure after I park it. I think it’s because I’m by myself so the air hostess has to realize (or made aware) that I need help (the other day I swear the ramp was bout 2 feet lower than the plane so my step into the plane was lil problematic) to come help me. And of course, u can imagine how well my body works when I under pressha! Ugh!!! Walking off is always better than walking on because I’m so much more relaxed.
The other thing that I don’t like about it is going thru security (only in the kissmehass winter). During winter, is boots, jackets, scarves and everything else you hadda put on to try and get warm…all of which hadda come off. Fuckin-A!!! Well I’ve started putting on a sad poemeone kinda face and begging not to take off my boots (I will surely miss my flight if I had to spend time putting them back on) and when I was heading to TX for thanksgiving, I kinda manhandled a man to help me with getting the security bin and maneuvering out of my jacket (I was very nice). He had a badge so I knew he wasn’t a passenger and he was extremely helpful…but the point is that had I a chair, the attendant would have helped me with all that.
But…all that is small ting. I really hope that my experience with any other airline is the same. I was concerned about different airports (because Atlanta’s is one of the best when it comes to accessibility) but so far so good.
btw…I typed this on my phone using the Blogger app. It’s not as frustrating as Dragon altho it’s a little more work but at least the stupid white border is not there. Ah gone so!
Hi
It’s been 5 months… I haven’t posted since July. It started off as a result of my being busy busy busy at work. For a few weeks back then, I barely knew my ass from my elbow because I had so much shit going on and then when things eased up a bit and I actually had time to publish something, my left hand started working against me and typing became the most frustrating/annoying/depressing/fill in whichever word you’d like here and so, I just stopped doing it (on my personal laptop). Remember, I have the Dragon software installed on my work laptop so things were much easier there.
A few weeks ago, it occurred to me that I could type on the work laptop, e-mail to myself and then publish using my Mac and so this is how I’m publishing today (how did this never occur to me before??? LOL)…i remember now too that i don’t like the white border that’s placed around the words when i do this – but small ting i spose.
so… Where to begin??? Bear with me, this may be long – it’s been 5 months!
Well lemme start with the medication. I don’t like Tecfidera; I really miss Tysabri and would like to go back on it. Tecfidera is the third disease modifying drug that I’ve taken – I’ve been on Copaxone, and Tysabri as well – and I can say with confidence that Tysabri was the best and my favorite. Now don’t get me wrong, I still have no side effects from the Tecfidera and it may be doing its job (slowing down the progression of the disease), but it does nothing for my general feeling of well-being and my disability has definitely gotten worse since I came off of Tysabri (which has shown to improve patient disabilities). I don’t trust myself as much as I used to, I’m not as confident as I once was (especially when stepping up) and my general feeling of well-being has definitely diminished. I’m still positive and upbeat but… Anyway, I go to see my neuro on 12/17 and will talk to him about this then. I went to see him sometime in August and decided at that time not to make any changes because I’d only been on Tecfidera for 3 months so figured I’d give it a chance… well its time is up! Like I said, I really want to go back on Tysabri but is that really advisable? I’ve been off it 8 months now; doesn’t that reset the clock??? (Using Dragon to type this is extremely frustrating – it still doesn’t understand my accent – FCUK!!! Using it for work is not this bad because e-mails at work are much shorter)
My handy-dandy scooter was the best money ever spent!! Unfortunately, I can’t use it when I’m on my own because it needs to be dismantled and placed in the car, but boy has it made my life easier on so many levels. As usual I went to Miami carnival this year. I’d decided from early on that I was going to take the scooter with me to go to a specific fete down there. Some of my friends who live in Atlanta drive down for the weekend and I was going to send it with somebody but at the last minute, I decided I would travel with it. Well let me tell you – that was one of the best decisions I ever made (in my life I think 🙂 ). I called Delta and found out what I had to do and braced myself for a trying experience – it was one of the easiest things I’ve ever done! First of all, I can’t say that I’ve ever seen anyone riding around in a scooter in the airport, but there I was riding up and down the concourse – just because I could! Going through security? A breeze!! Using the scooter gave me so much independence that (like I said), I was just riding all over the place, just because I could 🙂. It was also easier on my pocket because I didn’t have to tip anyone for pushing me around and when I went to Vegas in October, I saved $125 because I didn’t have to rent one. I want somebody to tell me I cyah travel with it in the future; I DARE YUH!! – aye allyuh, I not sure when allyuh getting another post because this is really friggin annoying – but I digress… then in the party in Miami, EVERYBODY (including people I didn’t know) was bussin ah wine on me and it – it was hilarious… a complete hit! Oh… And how could I forget, I even secured 2 (long story about why I have 2) cup holders for it – driving it while holding a cup was a lil difficult, so solved that problem!!
The masquerade ball happened again last month. It wasn’t as well attended as it was last year, but those who attended had a good time nonetheless. I must say, I was really touched by the number of folk who were there from the MSCA (including a doctor who’d only seen me once).
What else, what else… Christmas is nearing and I’m yet to get into the spirit but hopefully soon. I can’t think of anything else to write nah; I know I’m missing some stuff and will probably think of it after have published this but say wah, so it go sometimes. Besides, I don’t want to bore you too much for right now. So until next time, allyuh hol it dong!! I’ll be back – I promise
One Month Later
so it’s been a month since i’ve been on Tecfidera and i haven’t had any issues. no flushing, no stomach problems, nothing – GREAT NEWS!!! its always unnerving to start something new because u never know how u might react to it. Beverly (at the MSCA) mentioned that it takes a number of weeks to actually get into ur system and start working, so who knows what benefits i may eventually see. i go back there in August, so more to come on that for sure.
i talked about my telephone woes in my last post (the only issue i actually had) and everything worked out so i got the new pack yesterday. as it turns out, i had missed a dose (of course) last month, so i had an extra pill that i took Monday morning so i only missed 1 dose (monday nite).
after my rough month last month, i’d said that i was back to normal. i thought i was just based on how i was moving about a few times…the truth is, i’m not. Doing things that i’m used to doing (out and about) are not as easy for me anymore. i am still hopeful that there might be an explanation other than “the MS is progressing (ugh)” – maybe i’ll write about that later.
for now, i’m hanging in there…
Really?!?! Steups
once again, i’m just shaking my head right now…
so who thought that it was a good idea to preauthorize me for ONLY the starter pack of Tefidera (the 1st pack of medication includes 7 “beginner” pills that are actually half the normal dose to introduce it into ur system and then u increase to the regular dose after that)? some asshole somewhere amongst my doctor’s office, the insurance company and the drug manufacturer. Now, if that’s how things are supposed to work then that is just downright STUPID!
apparently the insurance company will not pay for the drug unless preauthorization is given. okay, no problem i can live with that. what i cannot understand for the life of me is, “why give preauthorization one month ago for the starter pack of the drug and nothing else?” was i going to take the starter pack alone and come off the drug??? why not authorize the starter pack and (oh by the way), lets authorize the maintenance (subsequent months of the drug) one time because…well that just makes sense! of course i didn’t find out about this issue until last week thursday or so but the person i spoke with said, “looks like u will still be able to get ur shipment on the 5th”….okay so i thought all was well, until i got an automated message to “call the pharmacy because there’s a problem.” on Monday of this week. long story short, today is Friday and it appears that when i run out of medication on Sunday, i’ll be up a creek without a paddle for a few days.
i wish i can be brave like all those out there who are managing this disease without the drugs! i’ll have extra money in my pocket and not have to deal with foolishness like this.